BOBBY JONES CSF NEWS

JANUARY 2022

Welcome to our News page! Every month, we will share important, interesting or newsworthy information about what’s happening with Bobby Jones CSF and what we feel you may want to know! Learn about our programs, upcoming educational and fundraising events, virtual support group & Ask the Expert meetings and research projects. We look forward to sharing it all with you!

Education

We will be resuming in-person lectures this year as well as continuing our virtual Ask the Expert series. Keep an eye out for January’s upcoming lectures and check out past educational lectures on our website here.

Have a topic of interest? Contact: mpoppe@bobbyjonescsf.org

Support

Introducing a support meeting for children ages 6-9 with Chiari, syringomyelia and related disorders! We all know the benefits of connecting with someone who knows just what you’re going through, let’s show our kids that they aren’t alone in this fight. Parents, accompany your child or children to the 6:30pm meeting and then stay on with us for our usual 7:00pm parent meeting!

1/11 @6:30pm – Children Support Meeting

1/11 @7:00pm – Parent Support Meeting

1/25 @7:00pm – Adult Support Meeting

1/30 @5:00pm – High School/College Support Meeting

Research

International Patient Registry

A very brief, new survey will be available in the online patient registry by mid-January. Make sure you’ve signed up ahead of time and you will receive a reminder notification. More about this survey:

The so-called “5mm rule” in Chiari malformation treatment has come into question because it does not accurately predict symptom severity or treatment success. In it, a patient is considered to have a Chiari malformation if their cerebellar tonsils are located at 5mm or greater below the foramen magnum, or the opening at the top of the spinal canal. The goal of this survey is to determine whether or not this rule has greatly impacted the likelihood of accessing neurosurgical Chiari care over the years. This survey will take less than five minutes to complete!

Chiari Surgical Success Scale
Enrollment is beginning on the CSSS. We are very excited to see this project through. In the next few months, we plan to offer a video crash course on the study and answer any questions you might have about the study.

Events

2022 Valentine’s Casino Night – February 12, 2022

Sponsorship opportunities, Tickets and other details HERE.
Donate an item for auction or raffle.

2022 Bobby Jones Classic at East Lake – March 27-28, 2022

Register, Sponsor and secure your hotel room HERE

“Oktoberfest” Dinner Dance for a Cure
SAVE THE DATE October 22 – Tickets and sponsorships available soon!

unite@night

We are so excited to officially open up the 2022 unite@night walk Chairperson registration. EXTENDED:  Anyone who registers before February 1st will receive a special item from us! (You will receive your item once we have your walk date and site confirmed and set up.)

Sign up to become a 2022 unite@night Walk Chair here.

Are you interested in becoming a 2022 national unite@night walk sponsor? View the sponsorship levels here. If you would like to register to be a walk sponsor online, visit here. Or you may mail in this form along with your check.
Please note, we must know by April 1st if you will be sponsoring in order to include national sponsors on the t-shirt.

unite@thehill

We will be walking to the Hill again this year. SAVE THE DATE!

Shop Amazon and Support Bobby Jones CSF

Thanks to you for shopping at smile.amazon.com or with AmazonSmile turned on in your Amazon shopping app! Your everyday purchases have generated almost $10,000 in donations to Bobby Jones CSF!!

Shop right now through the link below and AmazonSmile will donate a portion of your proceeds back to Bobby Jones CSF at no additional cost! You can do good just by purchasing items you already need!

 

If you remember to go to AmazonSmile first, every time you shop, that’s awesome! For most people, the best thing to do is add a browser extension that automatically redirects you.

For Google Chrome, check out Smile Always

For Firefox, check out Smile Redirect

For Safari, check out KeepOnSmilingThese extensions will automatically redirect you to your smile.amazon.com page every time, so you will never need to remember to go to smile.amazon.com first!